Are you sitting comfortably? Then I’ll begin.
Once upon a time there was a 30 something year old princess who had the world at her feet. She was living life to the full and had many friends and great things going on. Then one day she was struck down by a horrible curse. The curse stripped her of all the good things in her life and made her take to her bed for days on end; sleeping for hours and hours and hours missing out on what was happening in the world and what other people in their 30’s were doing. Then one day, a handsome Prince road in to town on his stunning white horse and…
I really wish I could finish that sentence but as many people with ME and other chronic illnesses know, life isn’t a fairytale and for us the curse is all too real.
I won’t lie, I’ve always been a good sleeper and do enjoy getting all cosy in my bed and as symptoms go – sleeping isn’t the worst. But extreme sleeping without feeling refreshed does get (pardon the pun) very tiresome. I know for my body and the random way it works, sleep is its default mode to stop me from doing anything and try to heal.
When I turned 30, I developed horrible migraines (which are now all gone thanks to my amazing chiropractor) and all I would want to do was sleep. That was ok then as I felt better after sleeping most of the day. Now, with the ME, I can sleep and sleep and sleep and I wake up feeling like it was a waste of time. I know I shouldn’t complain about this as some people with ME would love to be able to sleep but can’t because of insomnia. For them the trick is to get to sleep; for me its to stay awake. I also know that some of you reading this might have young children and are thinking that you would do anything to get a good sleep.
All too often I find myself waking up in the dark; confused as to where the day has gone and if indeed it has (particularly in the winter months). I have to do a quick check of the clock to see what time it really is. Luckily, the clock by my bed is a 24 hour clock or the confusion could go on.
Sleeping like this means I not only miss the day and trying to do something productive like brush my teeth, but it also means I miss meals. Waking up at 6pm means I’ve missed breakfast and lunch as well as a few wee snacks (healthy of course!). This means I’m not able to fuel my body correctly but it does have the perk that it helps me to lose weight – which, considering I put on 4 stone when I became unwell, really isn’t a worry for me at the moment. (More on that at a later date!). Every cloud and all that!
From a practical perspective, sleeping a lot means I go through a lot of pyjamas and really need to do my best to wash when I’m awake – not always easy when you have little to no energy. Personal hygiene can become tricky but I live alone so for me at least it doesn’t bother anyone else! Well, other than the cat!
I would like to tell you that I know what can cause me to sleep like this. I would love to say its from gallivanting all day the day before, whooping it up and living life like I used to. Or that it happens after a crazy day shopping in a shopping centre. Or after a day looking after my niece and nephews. But the truth is, it can happen no matter how much care I take to not “over do it”.
Back in November I popped in to visit my colleagues at work. The doctors had signed me off work at the time so it was good for me to pop in and see everyone whilst giving me a chance to see how I would cope. My first visit lasted about 3 hours with a 40 minute drive each way to get there. I was nervous and anxious about going in (which seemed daft to me considering I’ve worked at the same place for over 10 years) so the adrenaline was pumping but when I got there my colleagues were amazing. So warm and welcoming and I didn’t feel judged for being off.
I got home at about 6pm, popped a pizza in the oven and then headed to my bed once I’d devoured it. I know what you’re thinking – that sounds like a very rock & roll Friday night. I was in my bed by 8pm and asleep by about 10:30pm. Other than a quick loo visit, I didn’t wake up until 6pm on the Saturday. I slept for 19 and a half hours. That’s on par with how long Koala bears will sleep for!
When I woke, it was dark and I felt like I had been hit by a bus. My hands were very swollen and stiff with my wrists feeling like I had hot knives sticking through them. My legs felt like they weren’t still attached to me other than the pain I could feel in my ankles and my brain didn’t know where I was or how I had even got there.
If I had been on a good night out, I would’ve have quite happily accepted the way I was feeling, but I hadn’t been. I hadn’t even been out the house that long in reality and I hadn’t even had a very early start or a very late night.
What I did have going on was the adrenaline and bravado that I had used to get through the visit rushing through my body which obviously couldn’t cope with it nor the anxious excitement of seeing people, good people, again. My body was telling me – you’ve had you’re fun, now stop.
That Saturday night, after having only left my bed to pop to the loo and grab some food and drinks, I was asleep again before 11pm meaning I was only really awake for about 5 hours.
You’re probably thinking “well of course you were in this state, you’re ill and your day out was more than you should do”. To a certain degree I would agree with that kind of thinking, but I’ve had this experience way too many times to know that its not about what I do that causes this but something else. Something that I’ve yet to understand.
I’ve felt this way after a friend has come over to mine for pizza and a chat; after popping to my brother’s house for dinner; after travelling to and from Spain with the assistance of my folks; after working 9 hours across 3 days and after going to the supermarket. It seems that no matter how big a deal or exciting an activity is, I can end up sleeping and sleeping and sleeping. I can also do these activities and not end up in my bed for hours on end so its really not something I can predict which, to say the least, is very annoying. It would be great if I could say that, although I’m constantly in pain and extremely tired, the more excited or anxious; shy or brass; quiet or loud I am the more likely I’ll need to accept I need to wipe out a day for sleep.
Because I don’t want to completely let ME dictate my life, I have adopted techniques to help as much as possible to not sleep too long as well as cope with sleeping when I do.
On days when I need to be up for work or if I’ve got something planned I’ll set my alarm. Normal enough. Not to brag, but my alarm clock is amazing because not only does it play a very nice tune, it is also has a light that starts to warm up 30 minutes before the alarm is due to go off. This light is so annoying that it wakes me and makes it very difficult to hit snooze (too many times!).
If I do wake up naturally but still feel groggy and its around lunchtime, I’ll try to move myself down to the sofa. Its not as cosy as my bed so I don’t tend to sleep on it as easily plus the cat usually keeps me awake as he feels I’m fair game if I’m not in bed!
On the days when I do sleep right through, I make sure I have a carafe of water next to my bed so that when I do wake up, I can drink and try to rehydrate myself, which in turn helps me to wake up.
I’m getting more and more used to dealing with my sleeping beauty days and I’m trying to do my best to figure out how this curse works so I can try to break it. You never know, that handsome Prince might come along on his white horse, kiss me, break the curse and we can live happily ever after.